We recently got back from our trip to the Children's Hospital of Philadelphia (CHOP) to have Tucker's hands evaluated by Dr. Chang from their plastic surgery department. If you missed our initial post on Tucker's hands, I will leave the link HERE.
After going through a laundry lists of questions with the resident and having x-rays taken, we met with Dr Chang who officially diagnosed Tucker with Complete Complex Bilateral Syndactyly. Complete because the fingers are fused all the way to the tip, complex because his bones are fused at the tip and bilateral because it affects both hands.
So the plan of action is for him to have his first of 2 surgeries between 6-9 months old. This procedure will be to separate his pinky fingers on both hands. As he grows, his pinky being fused is causing his middle and ring fingers to pull outwards, away from his index fingers, and this is something Dr Chang wants to fix sooner than later. We had hoped that he would only need 1 surgery but Dr Chang said that doing them all at once would be too much trauma for his ring fingers as they would be cut on both sides.
When Tucker was born, the attending pediatrician at the hospital had him undergo an ECHO as heart issues often be associated with hand issues. The ECHO did show a very small hole in his heart which the pediatrician was not concerned about at all and simply recommend we have a follow up ECHO at 6 months to make sure it closed itself correctly. Dr Chang said that we would have to have that follow up ECHO done and have Tucker cleared by anesthesiology before we could schedule the surgery. His ECHO will be done here in Virginia at the beginning of December and emailed up to CHOP for review. Once we get the all clear from them, we will schedule the surgery which we are hoping to do sometime in either February or March. We are hoping that we can work it out where my mother will be able to be in town to stay with Jordyn rather than taking her with us but we will have to wait and see how that works out.
The second surgery will be to separate the middle and ring fingers on both hands and that one will happen between 12 to 14 months old. His birthday is the middle of June and we are shooting to have the surgery in July when my mother would be able to come out again to stay with Jordyn.
Both surgeries will require him to be in casts (they weren't sure if it would need to be full arm or just partial arm casts) for 2 weeks.
One of the possible "side effects" of this surgery is that the webbing might start trying to grow down the fingers again as he grows. If this happens, then he would probably have to have another procedure at some point to clip it back down so that he wouldn't loose any mobility in the fingers.
The last possible surgery he might have would be on his right index finger, the same finger I had operated on. His finger appears on the x-ray to be almost identical to mine. Mine never caused me any functionality or mobility problems but I didn't like how it looked from an aesthetic point so I had an elective surgery when I was about 11-12 to attempt to have it straightened out a bit and he will have the option to do the same when he is older, no younger than 7 years old according to Dr Chang. Assuming it does not cause him any issues, it will be completely up to him on whether or not he wants to have it operated on and we plan to just cross that bridge when we come to it.
So for the next year, we are looking at 2 surgeries and 2 cast removals which means 4 trips up to Philadelphia. My aunt lives about 40 minutes south of the city and we made it to her house in about 8 hours with stops with Jordyn. We are thinking that if we didn't have Jordyn we could probably make it to the city in about 7 hours or so. We also have the option of flying if we need to.
It's going to be an interesting year to say the least and we will be keeping you guys updated through the blog, our social media and possibly our YouTube channel.
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Until next time!
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